What happened in the consult to make you decide on the transplant?
I laid out my concerns about the transplant. I told her that I wanted to take the minimal number of drugs. Plus, I wanted a private room. I thought she'd kick me out for being so demanding but she said, "No problem."
Then she told me that she'd enlist her UCSF colleague, Dr. Chris Freise – also one of the best transplant surgeons in the country – to operate on my brother Terry, who turned out to be a great match. I knew right then that I'd landed the "dream team." It was the perfect scenario.
But then you had a setback.
Everything was going according to plan. My brother and I were scheduled for surgery. We had no doubt he'd pass the final physical. He is a marathon runner and one of the healthiest eaters I know. What could go wrong?
Well, two days before the surgery, the entire thing came unhinged. Tests showed my brother had high blood pressure, which meant it wasn't safe for him to go through with the surgery as planned. I felt the dream team slipping through my fingers. I was devastated. I couldn't even talk about it. I just resigned myself to dialysis.
Yet your brother did wind up donating?
A year later, UCSF called me. Unbeknownst to me, the doctors had worked with my brother to get his blood pressure under control. When they called, they said he'd passed all his pre-surgery tests with flying colors and it was time to schedule surgery. So, I hadn't missed my chance after all.
Describe your experience at UCSF.
I've been to many hospitals in my life, and I have never received the kind of care and professionalism that I got at UCSF.
Just one example of how they went above and beyond: My surgery was first thing in the morning. A transplant is a long, complicated procedure, so I didn't get back to my room until 9 that night. By that time, the 35 family members and friends who'd come to the hospital to support my brother and me were gone. Everyone was told to go home and get some rest – that I'd come through surgery well.
That part was true but there was still cause for concern. I had a "sleeping kidney," meaning it didn't work right away. The ultimate fear was that it would never work and the transplant would fail. Doctors and nurses checked on me regularly. But one young doctor-in-training sat by my bedside all night long. Just knowing he was there made the whole experience less scary. I can still picture him sitting there, quietly holding the faith. And to everyone's relief, my new kidney revved to life the next morning.
As a self-employed person, did you work during this time?
Absolutely. I took my iPad, my iPhone and my laptop with me to the hospital and set up a portable office in my room. I kept my regular schedule of work and conference calls. The nurses even put a note on my door to let everyone know not to bother me when I was on the phone. A lot of my clients had no idea I was in the hospital having a kidney transplant. The surgery was on a Friday and by Saturday I was back on the phone and "in the office."
How do you feel since the transplant?
It's not a perfect solution but it's better than dialysis. I do struggle with how the medications make me feel. Some of the persistent side effects I have are nausea, lightheadedness, anemia, diarrhea and fatigue.
I appreciate that my doctors at UCSF didn't sugarcoat how this was going to go. They warned me up front. In fact, when I first met with my transplant nephrologist, he told me all the worst-case scenario gloom-and-doom stories. I walked out of my first meeting with him thinking I never wanted to see that man again! Now I appreciate that he wasn't afraid to tell me the truth.
How was your follow-up care?
I am constantly amazed by how closely they monitor me. Every time I have blood work done, which is regularly, someone from UCSF calls me with the results within two days. My transplant nephrologist watches my numbers like a hawk and adjusts my drug regimen accordingly.
The best part about having my doctors at UCSF follow me so closely is that I don't worry about how my kidney is doing – I let them do the worrying for me.
Do you have any limitations on your life or your travel?
I'm starting to pick up where I left off. When I travel, I'm careful to take at least a week's worth of medications in my carry-on bag and two weeks' worth in my suitcase as an emergency backup in case I get stuck somewhere. Other than that, I have learned to tune in to my body and slow down a bit when it needs rest. But I've learned that taking it easy once in a while is not a bad thing!